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need somewhere to go


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Old 09-25-2016, 06:36 AM   #1
kaliska
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need somewhere to go

I'm not sure what I might have but constant insomnia, crashes of energy, and so on have led me to at least chronic fatigue syndrome. Getting answers from doctors is near impossible and I often end up suggesting diagnosis to them that turn out correct so I haven't bothered to figure it out in detail yet. A psychiatrist treats me for insomnia. My other forum changed design and it's horrible to use, near impossible on my lower resolution laptop until I got this new one, so I went searching and I am here. I just need somewhere to post occasionally.

Just to vent right now having not slept at 8 30 am I am stressing over family problems. My dad is in a horrible marriage and in complete denial. He says they get along 40% of the time and my sister and I both said 60% miserable is too high. It seems he thinks he doesn't deserve better. I sent him a long message about his family caring and wanting to include him and that he needs to go live life instead of being stuck in a house with just his wife. She said she'd call the police if any of his family or friends came around again. He's trying to claim he's fine at the moment but i am loyal to a fault and this person has endangered my family! Unfortunately I am the diagonal of missouri plus some away. Most of the time all I can do is talk to his side of the family and try to get him to communicate long distance. That is why I have not slept and used up all my spoons for the day.

 
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Old 09-27-2016, 05:30 PM   #2
Nickie8
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Re: need somewhere to go

Was diagnosed with CFS/ ME many years ago. Some of the symptoms are debilitating fatigue, muscle pain, cognitive dysfunction, swollen lymph nodes, sleep disorder,low-grade fever, etc. You need a thorough immunological blood work-up. Have you had your thyroid and vitamin d levels checked?

 
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Old 09-27-2016, 09:16 PM   #3
kaliska
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Re: need somewhere to go

I've had all sorts of blood tests. You want the short version of a long story that is still long.... I can actually pull up the more recent tests online from any visit to this one set of hospitals. The only thing noteworthy is my BUN/creatinine has steadily dropped from 8.3 to 4.6 over a year and a half but my new general doctor didn't seem to care. I've just been too tired of doctors to investigate this new line of potential diagnosis for my problems. They spent forever trying to treat my insomnia as anxiety and depression in my teens and early 20s with neurologists ignoring me. I was on seroquel more than a decade. Years of that and I suddenly started hyperventilating despite no emotional problem, insomnia responded to absolutely nothing, no energy, swollen abdomen, constipation, flu-like feelings.... My regular doctor just dumped miralax down me for 2 years, the ER would give me magnesium citrate which sucked because first off why are we putting carbonation in someone with digestive trouble (at home I'd pour it back and forth until the carbonation was gone)? and second none of it triggered my intestines to empty. They just blew up with fluid so my lungs couldn't fit oxygen and liquid stool slowly leaked out. I finally treated it myself with a regimen of stimulant laxatives I found in an article by a GI doctor dealing with non-responsive intestines like mine. I have since weaned off using anything. They also tried to take me off all meds except some benzo for sleep. I ended up in the ER, the next day again, the next day again and finally they stabilized my hyperventilating episode with asthma treatment, oxygen is nice, but it came back later and after all sorts of pulmonology and cardiology tests I'm just the hypochondriac they hook to monitors, take a chest xray, and wait long enough for hyperventilating to stop before sending me home when seriously it was not emotional. My lungs demanded to be filled and I hyperventilated until all my muscles locked down and I couldn't breathe for awhile, twice.

I went to urgent care instead of ER, for obvious reasons, one morning I woke up hyperventilating and they found my diastolic blood pressure at 40 while I fought to not pass out so they sent me by ambulance to the ER. They ignored my moments of hyperventilating so I just gave up and let myself hyperventilate until my body locked down for the second time. It seemed to fix things if I did that. They then sent me home. Forever a mystery but I am finding whenever my body is in distress of any kind it hyperventilates even if that's some stupid physical thing that should have no connection.

Shortly after the hyperventilating started my back increasingly had problems until I couldn't stand for more than 5mins because of the pain and I was practically bedridden. My next general doctor sent me to physical therapy with nothing but a physical exam of my back. I think the heat and TENS unit brought the infection to the surface and I happened to slip on the wood floor trying to stand up a day later. A huge cyst appeared at my tailbone and was written off at first but rapidly built pressure and pain until it burst and leaked fluid. They sent me to a surgeon that same day. He found I had an infection that had made several drain holes near my tailbone and may have been there for all the years they were trying to diagnose things. I don't think anyone knew how extensive it was. Weeks of draining later ina surgery they cut 6" up my spine and 4" out on either side removing the top of my butt, a scar several inches to the side of my spine now sits on it because they removed that much skin to close, and dug around in there getting rid of the infection. I spent months on antibiotics in agonizing pain with bruising all the way up and down my butt and back before my back improved. Then everyone dropped me like a rock and no one followed up on my health while I moved and fought to find a doctor taking patients in this stupid town.

Hyperventilation episodes stopped but not everything has. I still have the original insomnia (seeing a psychiatrist because gp aren't qualified for my meds and neurologists don't care), what I just call crashes where my energy hits rock bottom for no real reason and I take days to recover, I've had lymph nodes swell up periodically but not recently, it's been replaced by having cysts in my thighs again- I have scars all over from them breaking or me cutting ones out and closing myself up from weird angles, and some mornings my brain just keeps trying to go back to sleep even when I want to wake up because I am so sore my body doesn't want to face it. Even normal mornings I have to slowly get my muscles moving and usually spend an hour and a mountain dew or coffee getting everything to wake up and not ache.

After 3 days of sleep deprivation I just got so angry about it today I started changing aquarium water and didn't stop until I had also hiked 4miles. I can't move... tomorrow is martial arts class. I missed last week because I felt like crap to then have urinary infection symptoms and one of those thigh abscesses. I love Azo's new urinary med with a mild antibiotic in it. It avoids a lot of doctor visits because they don't find any abnormal bacteria just abnormal levels and squamous epithelial cells so they assume I contaminated the sample but my symptoms respond to antibiotics when I finally convince someone. Home tests consistently show white cells but negative on bacteria in my urine.

I just don't have the energy to go argue with doctors and be put through tests that never show anything is wrong except things they can write off as psychological and then do so.

Last edited by mod85; 09-27-2016 at 10:44 PM.

 
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Old 09-27-2016, 09:35 PM   #4
kaliska
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Re: need somewhere to go

Oh I forgot the completely benign lump in my breast they removed that was most likely formed because I gained a ton of weight, went from B cup to DD, and am losing it now. That was another round of testing for a few new things and a few too many trips to the mammogram machine for my liking by the time they were done. Don't let them do a mammogram sitting down.... You can't adjust position like when standing and every time I breathed it pulled on my squashed breast while I tried to hold myself to the machine by one arm.

 
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